Abstract

Paralleling the broadening of scientific thought occasioned by the human genome project, calls have been sounded to expand
research ethics to include a principle of ‘respect for community’ in genetic research. The principle is responsive to a history
of genetic research that has harmed some groups. The principle recognises that communities hold dignitary interests, values
and rights. For such reasons, it has gained recognition in national and international health research ethics norms. To help
translate respect for community into research practice, we identify selected ethics elements and research approaches, including:
collaborative community research; jointly defining research priorities and questions; informed consent; joint interpretation
and dissemination of results; community ethics deliberations and fair benefit sharing. Implementing such elements presents
challenges that merit interdisciplinary study, pluralistic debate and analysis. With such work, we project a future with fuller
recognition of respect for community as an ethical principle and duty in human research ethics.

Key Concepts:

Evolving research ethics requires protection of communities, in addition to protection of individuals – this also applies
to genetic research.

Protection of communities supports the ethical concept of respect for communities.

National and international research ethics guidelines support these concepts.

Respect for communities can be achieved through researchers using collaborative research with communities.

Collaborative research uses principles and practice from both participatory research and community‐engaged research.

Collaborative research maximises benefits and minimises harms for communities and groups within the communities.

Collaborative research impacts researchers, communities, institutional and community ethics boards and those publishing the
results.

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